Valerie, Thanks. That's a great story. How do you explain what epilepsy is?
I don't just walk up to someone I know or just met and say "Hi, I'm Valerie and I have epilepsy. What have you been up too?" But I'm sure you guessed that. If the subject comes up as to where I work or why I don't drive (because I don't do either) that's when I tell them.
A good bit of times when someone hears the word 'epilepsy' or 'seizure' they think it means that you are going to fall on the ground and start flopping around like crazy. Not many people realize that there are several different types of seizures other than a grand mal.
I normally only have simple and complex partial seizures. But I do have a grand mal about once a year.
Sometimes when I'll be talking to them and I say 'epilepsy' or 'seizure' they may get a big scary look on their face thinking that I might start flopping around at any time. That's when I try to explain what types of seizures I have and what I do during them. I let them know that I may get a little confused at times (simple partial) or I may black out during one (complex partial). Sometimes people will sort of understand and other times they won't. A partial seizure is a little hard to describe to someone who knows absolutely nothing about epilepsy.
Sometimes people will want to know more about the types of seizures and ask you more about them. Like what you do during one, how long they last, how many you have and at times more. I will tell them but won't sit there for and hour talking about it going into full detail. Heck if I did that we might be there for two hours!
If they want to hang out with me or go on a date I will let them know a little more about what I do during a seizure and what they should do if I have one so they know and how to react to it. My husband got pretty paranoid during the first one I had with him, a complex partial, about 2 weeks after we'd started dating. He called my parents right away because that's what my family said to do. My dad told him what to do and kept him on the phone. My dad was going to stay on the phone with him during the whole seizure but my husband said he'd be ok and got of the phone. My dad told him that if I wasn't back to normal, and explained what 'normal' was, in about 5 minutes then call him back. He stayed calm but I actually wound up in the ER because I'd been in the seizure for over 10 minutes.
You may not get lucky on the first person, (I know I didn't) but if you tell someone that you have epilepsy and they don't want to be around you because you do then they aren't worth hanging around in the first place.
The guy I was dating when I had my very first seizure broke up with me - He was a real winner!!!!! Not even worth getting upset when he left me, cause I didn't!!!